Macroblog

About Me

Crowdsourcing: A Definition

I like to use two definitions for crowdsourcing:

The White Paper Version: Crowdsourcing is the act of taking a job traditionally performed by a designated agent (usually an employee) and outsourcing it to an undefined, generally large group of people in the form of an open call.

The Soundbyte Version: The application of Open Source principles to fields outside of software.

The Rise of Crowdsourcing

Read the original article about crowdsourcing, published in the June, 2006 issue of Wired Magazine.

November 12, 2008

A Personal Note: A Boy Named Finn

I've dithered for weeks over whether to write this post. As my longtime readers know, I've maintained a strict formula for what makes it onto this blog: I don't discuss my other Wired stories, or the news of the day, or how I feel about the state of the nation. Above all, I've conscientiously kept my personal life off these pages, for the excellent, time-honored reason that stories are almost invariably more interesting than the personalities who report on them. The crowdsourcing blog is devoted, simply, to crowdsourcing, in all its various manifestations and implications.

Today I'm going to break with tradition, for two reasons: First, I believe in transparency; Second, believing in crowdsourcing as I do, I think it has applications in my own life, which is another way of saying I have faith in communities of people I've never met. I'll make the relevance of these principles clear in what follows.

My son Finn, born in September of last year, has significant developmental delays. While we don't know the specific cause for the delays, he lags well behind his peers on all fronts: His social, verbal and motor skills are all impaired. He was first diagnosed in February, when he was four months old. At that point we enrolled him in an early intervention program, which sends physical, speech and occupational therapists into our home twice a week. We also began the rounds of doctor visits. Delays impact every aspect of a child's development, so we had to take him to see an ophthalmologist, a gastroentererologist, a genetic counselor, a neurologist and, of course, a pediatrician. All this presented an enormous logistical challenge, especially as I was working seven days a week editing my book. So my wife bore that brunt of the burden.

This month it was my turn. Unhappy with much of the medical care our son has received, we've been finding new doctors, or pursuing a more aggressive course with the doctors we have, as well as procuring a (fourth) therapist. This has obviously taken a (temporary) toll on my work life, noticeable most clearly on this blog. So for all of you who've asked whether I'm working on my next book, the answer is, probably not. (While the thought of a book about Finn has its appeal, it's hard to write the biography of a one year old.)

At any rate, this is where transparency comes in. Have you had trouble getting me to answer your questions, or do an interview, or even just respond to your email? Now you know why. I'm not abandoning crowdsourcing—the blog or the subject in general. I'm not on to the next big thing. And I still love hearing about all your bright, shiny ideas for how crowdsourcing could be applied to agriculture, gastronomy and third world development. Keep the emails coming; I promise to respond when time permits.

And now for the crowdsourcing bit: I never intended to relay any of this in such an impersonal format as the crowdsourcing blog. We remained mostly silent about our circumstance, telling only close friends and family. But a recent email exchange with a reader changed my mind. It turns out he has extensive experience working with kids with developmental delays. It turns out a lot of people do. And our silence hasn't served us. And it defintely hasn't served our son. We've been so busy the past nine months that we've failed to make contact with other parents in similar situations, or even identify the kinds of support networks that would provide us with invaluable information about Finn's condition.

I'm not crowdsourcing for your sympathy. Raising Finn may be mind bendingly difficult, but there are far better candidates for pity. He's healthy, active and calendar-grade cute. I am crowdsourcing for your information. Know of a Brooklyn-based support group for special needs caretakers? Bring it on. How about special therapies to increase social engagement in toddlers? I want to know about it. I am, in short, hoping to make contact. I strongly suspect that many of you have experience—far more experience than us—trodding this strange road we've found ourselves on. And just maybe, some of you have a map. We'd love to see it.

Comments

Wow. Jeff, I was very moved by this entry. So much so that it brought tears to my eyes and a lump in my throat. Thanks for reaching out like this - after all it is - as you say, you're belief in the community that you don't know yet which crowdsourcing enables.

I am going to tap my circles about this and get back to you. God speed -
G.

It's clear from your words that you have not treated lightly, the decision to post about your son, Finn.
I applaud your courage and honesty in deciding to tell your readership about the difficult journey you and your family have embarked upon.
In reaching out, so movingly, to tell us about Finn, I am sure that you will reap the rewards of other people's experiences as parents of children whom need extra support and possibly medical interventions to thrive. Each month will bring small triumphs, disappointments and even sorrow; but also much joy as Finn achieves some milestone, however small, that marks his journey towards his destiny - and yours.
I have also been privileged to work with Special Needs young people here in the UK, and as a parent of a daughter and now granddaughter with challenging medical needs.

After sorrow, anger at the medical system, self-pity (why us?) and then empathy, our family learned to treasure those little steps of progress or differential diagnosis. For me, the hardest part (it gets so much easier) was to challenge the well-meaning mediocrity of some professionals and seek out those doctors and other health professionals prepared to really get to know your child's needs and network to find the best medical resources to treat accordingly.
We decided to focus on the ability and not the disability - and plan accordingly!!!

I wish you and your family all the best to help young Finn to achieve his fullest potential.
I really hope the USA parent support network helps you find your way to the most appropriate care for Finn.
Best Regards. Luke.

Jeff, wherever we might place ourselves within the context of what one might call normal, I have long since realized there is no such thing. As much as one might wish to have the perfect instrument, to some degree or another we all fall short.

A PhD in most disciplines demands no less than the ability of an individual with disabilities might have in tying a shoelace, buttoning a shirt button or managing affective communication.

In this world of ours where success, social status and the like are often measured by milestones that are biased toward material gain, those who fall out of the mainstream of our society are often considered to be less worthy. Therein lays the illusion that capabilities benchmarked by material success or social status-or-acceptance define personhood.

I applaud your courage in sharing a very personal situation that destiny has placed upon your family’s life path.

I happened upon your site just now for this first time doing some research into recent interesting crowdsourcing projects and just read your post. I live in Ireland so unfortunately I know nothing about support networks in your part of the world.

I do however have a sister (now 34) with severe learning disabilities (she was born with hydrocephalus and spina bifida). My mother, very frustrated with the lack of support that was available at the time, took a diploma in Montessori and spent many years working very slowly with Emer to improve her motor, reading and general development skills. The techniques were very successful in her situation. I also know that she found networking with other parents in similar situations enormously helpful and in fact gave a huge amount of her time to Emer's school and now residential care unit.

It might also be nice to know that Emer is a wonderfully special member of my family, loved very dearly by us all (we are a good solid Irish Catholic family of 7 children!).

I was a special education for several years before leaving the classroom for other adventures - working with children with severe disabilities. I had the pleasure of working with dozens of amazing families and children. Two truths emerged for me.

1. As much as possible, avoid talking about a child in the third person. If you must, ask their permission. This sounds silly but if a child's communication skills are delayed, it becomes very easy to slip into "talking about" a child in their presence. When you start to visit play groups and pre-schools, I'd encourage to tune into how the adults talk around the children. This can be a huge indicator of what type of interactions your child will have during the day.

2. Be prepared to wrestle with the issue of age- appropriateness. As Finn gets older, you may find he's still enjoys "baby" toys. I had several older students who, without fail, picked Sesame Street videos during free time. It was always less of a struggle for the teachers when we had talked with the parents beforehand about their opinion on age-appropriate activities versus choice and cognitive-development appropriateness.

jeff,
as a psychiatric social worker, who has done assessments for pre-school children, its sounds like you are doing everything right. actually you sound like such an incredible parents he is very lucky to have such pro-active parents.
sincererly,
Lauren Cohn

Thank you everyone for the insightful, empathetic, useful comments and emails. Above all, it vindicates my decision to post about Finn. And thanks Alan for helping me reach that decision in the first place. J

I responded to you in a direct, more lengthy email about two regional NYC-based resources for you to contact for help for you, Finn, and your family. I am posting general information about these centers in case you are not already aware of them and for the benefit of others who may read your blog post and these comments.

My referrals come to you courtesy of Cate McClain, MD, Director of the Center for Development and Disability, Department of Pediatrics, University of New Mexico School of Medicine, http://cdd.unm.edu/

Another center is located in Westchester County just outside the city:

Westchester Institute for Human Development
University Center for Excellence in Developmental Disabilities
Center on Disability and Health
School of Public Health
New York Medical College
Valhalla, NY 10595
Main Phone: 914-493-8204
Main Fax: 914-493-1973
TTY: 914-493-1204
Main Email: wihd@wihd.org
Website: http://www.wihd.org

Hi Jeff,
I am always sad to hear other parents having difficulties. I had 2 boys that would not speak. There was nothing ' wrong ' with them, they just didn't do it. My first son went to speech therapy and it didn't help, as they said his maturity was also lacking. With my second, I did not do this, as I rather not hear the negetive words again. Both of my sons were treated like they had mental disorders and behavior problems in school and were singled out by teachers, parents and peers. I had to stand up to everyone for them. It was a very hard and trying road. Trying to make sure they recieved what they needed, and at the same time not letting them see that they were indeed behind their peers in almost everything.
My first son did not say his first word until he was 2 years old.My second son was almost 2 when he spoke. They sounded much like toddlers when they started school. I am happy to say that now my boys are 16 and 18. My oldest has played provincial level football for a few years now, graduated highschool with distinctive honors and is in University now studying a degree in science. My second son is gifted in English language arts and reads, having comprehension skills of minimum 3rd year university. He was tested a couple of years ago because they were curious with the past he had. Nobody knows why this happened to them, but now I see it in so many children.
I wanted to share a success story with you after having been through this. Many nights crying, many nights screaming into pillows when I didn't know where to turn. I wish the best for your family and if your little angel has anything like my sons, I wish you great strength. The most help he will get, will be from his mom and dad . Take care.

Many private speech and occupational therapy clinics (I worked at one such clinic in CA) offer group social skills sessions for different age groups. These can range from teaching simple play skills for small children, like sharing, to taking pre-teens to restaurants to order food, interact with peers, and learn school appropriate behavior skills. The sessions often run for an hour or two, once or twice a week, in ten week periods. They are a good way for your child to meet children his age, interact with them appropriately, and engage in language activities.

Finn may be a bit young for these now, but I imagine that they will become more appropriate in a few months. These will also be great places to meet parents who are struggling with similar issues and share knowledge. Think of it as a community of practice - for parents. There are also likely special needs focused pre schools and toddler care centers in your area that employ speech therapists and behavioral therapists to help Finn along in his development.

If nothing else, be glad that you have caught the delays early, and have pursued serious treatment for them. Early intervention is often the best step you can take. Tapping into local resources, like other parents, is also incredibly valuable. In addition to giving you resources for your son, it can present a solid model for maintaining your relationship with your wife during these stressful times.

As a mother of five and grandmother of nine and 'Mom' of countless, I have to say you truly are doing it all right. As a teacher and lover of words my mind just keeps snapping back to "it's hard to write the biography of a one year old" which is absolutely true - but what a concept. Oh, and to Randy whose boys didn't speak for ages. My youngest took so long that my husband was concerned about her hearing - until he heard her imitate the rooster next door perfectly and la-la-la the melody to songs. She spoke when she was ready "My shoe is lost" (in the snow) - and also ended up gifted and talented in language arts and reading.

Dear Jeff,
Support networks are key to finding answers to tough situations and questions you are trying to get answered. I have a son with special needs and the most promising information I have found is through networking with other parents in similar situations.
I don't know if you have an organization called ARC. It has been very helpful for us as parents of a very complex mentally challenged child. They had answers for me. Another organization in which you can meet parents of special needs would be Special Olympics. Even though your son is only one year old, you can get started in a wonderful support network and they might have preschool programs.
Good luck to you! It can be quite a challenge to
conquer but the rewards are plentiful.

Finn is lucky to have parents that are doing all they can to help him be his best. You have already done so much for him and with a good team behind you, he will continue to make progress. I have a son who we have spoken about who has a heavy medical situation but he is very sensitive and mature beyond his years because of it. Children are more resilient than you can know at this point and they only know the world you surround them with. I agree with the woman who talked about not speaking in the third person. Ask your O/T for a Brooklyn-based support group or call the local school district. They should be able to refer you to one or two groups.Children understand so much at such a young age. Just find joy in loving him and nurturing him.

Jeff:
Just caught your Berkman talk online today and then saw this link. We write in similar areas and I am also a former media type, turned teacher and researcher. We also share a common personal story -- my 6-yr-old had (and still has to some extent) dev. delays....As others here have said, you are doing all the right things...going to the end of the planet as we did and having to put work on the back burner (a very hard thing to do for overachievers, but, of course, well worth it and necessary). Some wisdom to share I hope:
1. Be good to each other. It's extraordinarily stressful going through this and it can have one hell of an effect on a marriage. We've been to hell and back and feel stronger for it...but it takes a toll. You will be a new couple for it. Stronger in some respects, scarred in others. But together if you fight for it.
2. Use the medical labels Finn gets for the treatment he needs and then, let them go. We've had so many labels here that I've lost count. What I do know is what and where the deficits are and which specialists can help address them. (I particularly liked the 3rd person comment...this will become more relevant to Finn later..)
3. If he doesn't show affection and fun/giggles the way other children his age do, do NOT read that he isn't having or feeling those emotions. He is. I wasn't sure mine was feeling much of anything at his age and later. I find out now that she does and she did many times...she just couldn't express it in a way that I understood.
4. When you feel you've exhausted the ends of the medical universe, then quit. For a while. Live your life with Finn as it is and find the pleasure in the small achievements and joys. There won't be answers, always, and that is OK.

We are enjoying our daughter more than ever and she is doing well. She is happy and very sweet. I can't imagine her any other way, though I would be lying if I said I wouldn't change it all if I could.

Finn is lucky to have parents that are doing all they can to help him be his best. You have already done so much for him and with a good team behind you, he will continue to make progress. I have a son who we have spoken about who has a heavy medical situation but he is very sensitive and mature beyond his years because of it. Children are more resilient than you can know at this point and they only know the world you surround them with. I agree with the woman who talked about not speaking in the third person. Ask your O/T for a Brooklyn-based support group or call the local

you will reap the rewards of other people's experiences as parents of children whom need extra support and possibly medical interventions to thrive. Each month will bring small triumphs, disappointments and even sorrow; but also much joy as Finn achieves some milestone, however small, that marks his journey towards his destiny - and yours.

This is such a fabulously intriguing idea, these books that will never be written. And now I so want to read them all, mostly due to your skill with evocative covers. I look at them and feel the story within. Or the story that could be within. I'm not sure if I should thank you or curse you...

I had to stand up to everyone for them. It was a very hard and trying road. Trying to make sure they received what they needed, and at the same time not letting them see that they were indeed behind their peers in almost everything.